Any Medicare Advice for ESRD?

[LaraMC]

My son is 25 and has endstage renal disease. He is on dialysis and preparing to learn more about a transplant. He is off our insurance in a few months and has been accepted for Medicare, but medicare is confusing, and some choices cannot be undone. SSA would not answer questions and I am overwhelmed with finding answers, knowing what questions I should ask. Does anyone have any information or experience they can share with me? Any suggestions would be helpful. Thank you.

[bumblebee_tuna]

Have you contacted the dialysis center? The usually have someone that can help.

[LaraMC in reply to bumblebee_tuna]

Thank you for the reply. I have. They are so friendly, but they are not 100% sure on some questions and refer me back to Medicare.

[Bassetmommer NKF Ambassador]

Go on line and look up Medicare insurance brokers. They will advise you on what is best for your son. And they do not charge you, they charge the insurance companies for their service. Do not think this is too much of a hassle because if you apply for the wrong coverage, you are stuck with it for a year.

[LaraMC in reply to Bassetmommer]

Thank you for your advice-- Its so hard to get accurate information. I have heard that once he elects a medicare advantage plan, he can not choose to go back to traditional medicare and that some hospitals (ex. Mayo Clinic +) do not accept patients with Medicare Advantage plans.

[Bassetmommer NKF Ambassador in reply to LaraMC]

Medicare will be his primary, with what ever plan works best as a secondary. I have a G plan, which is a supplement. I amnot sure if they are available but there is something similar. I pay NOTHING..... for dialysis or hospital or anything... so far. But the premium is up there. Well worth it to me. Call a broker, that's how I found out what is best.

[Darlenia in reply to LaraMC]

It's often best to stay with Medicare. With Medicare Advantage Plans, Medicare essentially shuffles a stipend over to the insurance company for an enrollee's care. The insurance company then takes over your son's care - they handle all claims and all matters re the enrollees health. Advantage Plans generally operate in regional or defined areas. And they may or may not have many doctors, centers, etc. on their rosters. There's also a risk that a State can disapprove of a given plan (or a company can choose to drop it). Medicare is nationwide and is generally accepted most everywhere. This is exceptionally important if your son wants a transplant at a center in an area not covered by certain Advantage Plans. Now, if being limited to a specific area and to certain doctors and so on isn't an issue, then they're fine. I agree with Bassetmommer that speaking to a Medicare broker is a good idea - s/he will likely listen carefully to your son's wants and needs and come up with the best solution for him.

[LaraMC in reply to Darlenia]

Thank you Darlenia -Okay-- This is what I was hoping for. As I have been asking others I have been hearing little warnings about things like this along the way.

[worldtravel75 in reply to LaraMC]

I was told to never take an advantage plan -no matter how good it looks

[LaraMC in reply to worldtravel75]

Hmmmmm.... I think this is wise advice. Thank you worldtravel75.

[lowraind in reply to LaraMC]

Have you kept up to date regarding Medicare Advantage plans? There are hospitals that are not accepting M.A. I have long felt that there was no way they could keep offering what they say they offer. It looks like it is catching up with them now. Tread very carefully!

[LaraMC in reply to lowraind]

I am completely new to this whole thing, but insurance agents can sometimes be so slippery. I cannot see how they can possibly keep up especially with heavy needs medical care patients. Thank you so much.

[jodaer]

Check out your state's Ship program. They are free and will help you find the right choice for your son.

[LaraMC]

Thank you for this advice, I think thats a great way to go.

[EYatNKFSvdMYLIF]

I agree with the above persons comment you can contact Ship. This was just my route when I got the shock of my life I had kidney failure in both kidneys at age 36. 2 yrs later I found out I was misdiagnosed at age 22 and given a drug that blew out both kidneys. I said the hell with it and said call me whatever you want and kept permenant disability as I knew it would it only be me 10 yrs from then before dialysis as I given 5 to 10 yrs but I was so afraid of dying I knew I refused nothing but to make it to 10 yrs. I am different now and much more tired. When you are young your body can compensate more. Facing a life threatening illness I ended up with PTSD and that is why after the misdiagnosis I keep the permanent disability under that reason now. I filled out all that paperwork too. I had 38 specialists before I had kidney failure and those doc appts I listed in my application for disablity. I would also advice getting a copy of your records from who you find most important as at that time docs kept recrods for 7 yrs now they only do for 3. The amgen lab logs helped me. I dont' think NKF has them anymore though. But they may have similar. I dont know. That was my just my strategy. Everyone develops their own I got my kidney for being proactive. Your son has you luckily and that support is huge. I hope you have a lot of support yourself. I have to start all over again and recently I said I will have to contact NKF. I knew from all their information they sent me as Iam a state away that I got an aritcle once that said get your muscles in shape for dialysis. So I took a job in 2007 at a Convenience store as an Asst Mgr leaving the offices on purpose to get myself moving and physically muscles in sahpe for dialysis and when I left that job si when I had their cobra and found Delta Dental. So along the way you learn so much. I was told back then no matter how much I prepare you are never prepared for dialysis. Oh they weren't kidding but I am no where near who I was from 36 to 47. But I do have the tranining from learning. So your son is very young but he's already already had his path before dialysis. Its the research you are doing now that will help his future. It does get harder. So much happens in life that changes. Yet I kept all my research NKF gave me. Its fills my bookcase many stays on the kitchen wall and bullentin board. As time when on I added to it. Such as I what happens when the kidneys fails I found on line a few yrs ago and now here I am running around losing my mind over my elevated creatinine with no damn answers furious with everyone then suddenly realizing 6 months later it was NKF's training ongetting all their research that that 9 page thing I have dangling from on wall about what to do when a trasnplant fails it was what told me IT said the flue. Well a lot of stress from a horrible new offfice staff and no answers left me in the ER with a possible heart attack and stroke in Oct that luckily I didn't have. A month later I ended I have no clue how no one is more careful than I got the flu the 1st time in 25 yrs. Here I followed the paperwork i got during the transplant and had a 100.8 fever and no one gave a damn. I was furious. I had an office girl who has been blocking me from the doc for 3 yrs while being home on telehealth and i would just bypass her but the other girl left. i had wonderful staffs for the 1st 7 yrs now this crew is awful. So the witch played her game inthe middle of all this. Last july after seeing the trasplant center every 6 months for 9 yrs they said with the creatinine now 1.3 see ya next year. I nearly fell over. Yearly now that the kidney is going. I got jerked around by this girl when my local doc said for 1st time see her in 6 wks instead I coucln't get to her for 6 months now i need to find a new doc and apparently its limited now since COVID. I have not had the best luck but I did have great luck but its the stress that dominates and all I deal with. It was easier when I didn't know so much but I know my numbers. Its why I am alive and why I got this 1st transplant. If I left me up to the docs I wouldn't be here. NKF Is the best of all foundations. You really have to be your own advocate and learn as much as you can. Now I realize I am on my own but I have the training I did from NKF form 2002 to 2014 and all I have researched online since. Dialysis is pure hell but that was. Hemo PD was best for me and worked the best once I got out of that corrrupt center back to a good one. What happened when I got in touch with NKF they told me 2004 about a center. I went to a local one back then when I was fine and introduced myself to the Nurse who 10 yrs later my surgeon said was the best in my area. She was. When I transferred on hemo which was a mistake to a back up plan center I had I switched to criminals. I got back to the original center after a year of hell and it was that nurse I met in 2004 that in 2013 to 2014 repaired the damage the bad center did to my body to get me ready for the transplant I got in 2014. But I went and networked my way from the minute I found out I got sick. My doctor didn't like I went so early but i made a friend out of her. I don't have that situation now but I know now. Its harder but I do know how to. So what you do young and what you research and learn now will plant seeds that will be your lifeline later. Here I am with the flu with 100.8 temp and clueless what to do. I got back to the ER. Well I found through an article online from LiveStrong the diet to lower the creatinine. And for the 1st time since April last yr my labs last month were back down under the range to 1.0 because of that diet. By doing what i did with research prior those skills stay unconsciously and your body tells youin its own way. When you konw your body you will pull through. I was so furious because I know anythign and every thign about the GFR. Its different with transplant the center by goes only the creatinine. My doc goes by both but I can't get to the docs its the peopple the office people or coordinators that dont' have the answers or block your or you have to wait for appts with the doc and still may get answers. I need to know. My theorgy was once its above range that it this 8-12 yr deceased kidney is now on its way out so what are the signs and what is the creainine number. Now because its stayed 1.3 for 8 months it was me who got with tons of water and that diet that brought it back udner the range, with no one understanding my frustration all i amgetting now is oh it can go up and under. BS. It doesn't stay that way for 11 months and suddenly go back down. Without NKF right now I am lost. I will call them soon I am just stressed and having to start that again and taht requires down time to get ready. So when you learn your numbers no one can take it away from you and in fact it helps the doctors. I had a UTI on dialysis and they couldn't give me anyting at the ER. I impress the doc with know

[EYatNKFSvdMYLIF]

with konwing my numbers so much he smiled and suddenly though wait I am going to go check the PDF. He smiled and quizzed to I know my creatinine clearance and I did. That was because of NKF. I was lucky ot have 2002 to 2011 with them before dialysis to get ready and learn those habits. The doc came back and was able to give cephlex at a lower dosage. So it helps them help you. I had an LPN course at age 27 I only it through 2 phases but I never would have thought 6 yrs later I would ever need to know my labs. I still didn't but but the Amgen lab logs taught you in a paragraph what each item meant your hemoglobin GFR Creatinine etc and by getting of the labs and writing them down I would write when th dates I had a flue shor or especially the pneumonia shot. When I was on dialysis they didn't know if they could give me a phemonia shot as they only give 2 in a life time back then. But my kidney doc got rid of the records after 7 yrs and only had 1 yr and 1/2. But I went home and checked my lab logs and I smiled yep 5 yrs earlier I had it recorded there and the center was able to give it to me. I was told not too many patients used those lab logs or do what i did. But we all have our own way. And if anything I say you can use in your sons future for yourself in research I hope this helps. Now today I am seeing the 1st commericals for CKD and I laugh because it was me doing the diet and clinical trails in the 2000s. Then I got this email which I didn't get to do as I was inthe ER that NKF is now coming out with a Diet app or something for the phone. I think that is best gift anyone can get. My creatinine was under range because I pummped the water and diet online to lower the creatinine. I also was careful to check my medications I take with it. On dialysis what you doing for him is the greatest gift because dialysis is so taxing. I so wish for your son a transplant and that he gets one soon. For myself I choose Original Medicare. I have this comparrison chart on my bulletin board from years ago from Medicare RIghts Medicare Interactive from Medicareinteractive.org I just loooked it up online the titel is Choosing between Original Medicare and Medicare Advantage. It gives you the differences. Original Medicare works for me because I had no support and have the luck to be on Social Security. Your son is young and if he is working or works after a transplant he can gain more working credits into Social Security. 3 yrs of working equals 1 credit . You 71 working credits to retire. But I had 68 credits at age 36. I worked in my teens. That got me more money in my fixed income. So that is also a consideration for after a transplant in his future to have more income if he gets on a fixed income. A lot of what I chose also has to do with the State I live in and their disablity laws. I am lucky they have really good ones. But the County I live in is expensive so their Medigaps cost and company choices may be different too. The cost is $160/monht in my area which is a lot but may be the answer for what you want. Social Services in your area could be a big help. Maybe not just a one try either. It was me talking to a wonderful man in person by chance who he got up and called a friend he had in another office and came back to me with the information. Networking is accident i just kept babbling about everytthing to everyone and you never know what you may come across. I haven't been on here in a very long while. I hope any of this information helps you or anyone else. I wish nothing but the best for you and your son mainly better feeling days. Please stay healthy and safe out there! Sending my very best!

[RhenDutchess123]

He should be accepted for Medicare for his Dialysis now...and he also needs a Supplement to pick up what Medicare does not pay...Medicare only pays 80%...so unless he has a Supplement , he will be liable for the other 20%..You really need to visit with an Insurance Agent that deals with Medicare to make sure he gets all his bases covered...His Dialysis Center should be able to help direct you..

Wishing better times for You and Your Son

[LaraMC in reply to RhenDutchess123]

Thank you sooo much -- I think If a patient is 65+ on medicare, they can get a supplement plan regardless of diagnosis, it may be expensive, but they can get it. Patients under 65 are not granted the same. I have not checked for sure yet, but I am doubtful that any insurance company would accept a him with such big medical expenses looming-- like transplant etc. BUT.. thats just what I have been told, so many people have given other information, thats why I was hopeful for personal insight on the forum. Thank you for taking the time to respond to me. I am grateful for insight and advice

[RhenDutchess123 in reply to LaraMC]

I started Dialysis at 62...I was put on Medicare and I purchased a supplement to cover what Medicare did not pay...Medicare costs around $140 mo and my Supplement is around $160...Because your Son is on Dialysis he can recieve Medicare and Supplement...at any age

[LaraMC in reply to RhenDutchess123]

Thank you-- I will definitely check it out-- I have gotten so much conflicting information regarding what he's eligible for. I appreciate your insight

[barbara55109]

My advice is a bit different from others here. I don't trust insurance brokers at all. They are salespeople who earn their living by getting you to sign up for a plan they get paid by. Some others mentioned SHIP. Not every state calls it SHIP, but there is a federally funded assistance, usually run by state government, that can counsel and help you decide what to do. In Minnesota it is the Senior Linkage Line. There is a national website that can point you to the SHIP program in your state. shiphelp.org/ SHIP staff do not have skin in the game, like brokers. They are paid by the state, not by the different Medicare advantage plan and Medicare supplement companies. SHIP offers unbiased help.

Is your son working? If not, or if earning a very low wage, he may be eligible for Medicaid in your state. Folks that are "dual eligible" have much better coverage than Medicare alone and don't usually have a Medicare supplement since Medicaid pays for what Medicare doesn't. There are also Medicare Savings Programs in each state that pay for some Medicare premiums and copays. Medicaid and Medicare Savings Programs are for low income folks. Each state has different income and asset limits for these programs.

[LaraMC in reply to barbara55109]

This is how I feel too! (about insurance sales) I will look into SHIP for my state, as well as the other possibilities youve mentioned. I just feel like I dont know what I dont know, so I am sure I can be misled, being as ignorant as I am on the subject. Thank you, thank you!

[Puppieluv]

Talk with the Social Worker on the Dialysis Unit. They should be a good guide with some of your questions.

[LaraMC in reply to Puppieluv]

So far they are very kind, but giving mixed information, so I am leary aboout believing them 😐

[allene7]

I would ask at the transplant center. If your son has gone to be tested etc,,, When I went to meet everyone, doctors, social worker etc. they were really helpful to me.

[LaraMC in reply to allene7]

This is wise advice-- we dont have a transplant center yet, and some hospitals and programs dont accept advantage plans. I am afraid I dont know enough to choose the right direction and will end up limiting his care . I think its probably worth contacting a transplant center to ask what they typically see patients with. Thank you- I appreciate your response